Disability Bill 2004: Second Stage (Resumed).

Wednesday, 13 April 2005

Dáil Eireann Debate
Vol. 600 No. 2

Page of 199

Question again proposed: “That the Bill be now read a Second Time.”

An Ceann Comhairle:Deputy Howlin has eight minutes remaining.

Mr. Howlin:I spent the bulk of my contribution last night analysing the Bill and trying to outline the sense of disappointment felt by the disability advocacy groups when the Bill was published to the House and the Government in particular. These groups were let down by a broken promise.

The previous Disability Bill was withdrawn because of the pressure brought by disability groups which expected a rights-based Bill. When a consultation system was put in place, people, particularly the advocacy groups, believed that glaring deficiency would be addressed with new legislation. After two years of so-called consultation which conveniently allowed the Government to get beyond the local and European elections, the submissions and the acknowledgement of the good work done by advocacy groups, families and friends of people with disabilities and people with disabilities themselves, the Bill that was published again failed to recognise the principle of rights-based legislation.

The advocacy groups’ position was both reasonable and measured. They acknowledged that it would take some time for the various services that were needed to appear, for example, speech therapy, motivation therapy, family supports, placement in residential situations and day care. There was an understanding in the dialogue that took place over the two years that it would take time to develop these services. However, the groups believed that once the principle of rights was agreed, a partnership approach to the delivery of that right could be agreed. Nobody expected the services to be introduced overnight. They expected, however, that the old attitude of tokenism towards people with disabilities would be dispensed with and that the vindication of citizenship would be provided through rights [718]enshrined in legislation and would be worked through on a structured basis over time. The Government, after perpetrating a con-job, rejected that core principle and decided to perpetuate a culture of dependency and charity. It is shameful that after all the consultation, dialogue, submissions and the passage of so much time, we are back to that type of approach. It is particularly shameful given that Ireland has never been wealthier or better able to help people with disabilities enjoy full citizenship.

Every Deputy has been inundated with views of people with disabilities, their carers and their advocates. Nobody can doubt the sense of betrayal felt by these people. In my constituency, the Wexford Centre for Independent Living and the Gorey Centre for Independent Living have written regularly to Wexford Deputies and, I think, to Deputies across the political and geographical spectrum. People like Kenneth Kilduff in Gorey, who has a disability himself and is a regular advocate for the disabled, has been consistent in his demands for rights-based legislation over the years. He was led to believe that this Bill would meet his objectives. People with disabilities, their carers and their advocates are unanimous in calling for this Bill to be scrapped and the core principle of rights to be restored.

We should build up services, identify individual need and provide the assessment of the individual with a clear promise that over a fixed and understandable timeframe, those needs will be met on a case-by-case basis. We should build real partnership, rather than the pretence of partnership, between service providers and the State and people with disabilities.

I will use the remaining time to address an issue of mental health, which is of critical concern in my constituency. I speak particularly about the appalling deficiencies in the adolescent psychiatric services in County Wexford. I have here some of the individual case files of desperate young people who cannot get psychiatric assessment. It is because of a lack of resources rather than a lack of enthusiasm within the limited resources that are present, which are being stretched to the limit. Were the Minister of State to read these files he would know that the current adolescent psychiatric service is limited to under 17s who are suicidal or psychotic. That is the extent of it. There are no evaluations in the educational context. It is no exaggeration to say that only a bare fire brigade service is available to those who have real need.

Families are at their wits’ ends. We can afford to do better and have a moral obligation to do so. If we do not provide psychiatric supports to people who are vulnerable at that critical stage of development, the cost to the State, not to mention the cost to the families and individuals, will be greater in the long term.

I ask the Minister of State to have particular regard for the development of adolescent psychiatric services across the country. The model of best practice is there but its delivery is excruciat[719]ingly slow, particularly in County Wexford. So as not to invade the privacy of the individuals who are in situations of desperate need but have no services, I will not put their cases on record. However, I ask the Minister of State to take note of this critical deficiency in County Wexford. It may be replicated elsewhere but I will personally and trenchantly bring to the Minister of State the cries of the individual families and the needs that have been identified by both service providers and these families seeking those services.

Mental health is one issue. We must provide decent mental health services across the country. We must progress the provision of the acute psychiatric admission wards in our general hospitals that we promised but in which we are making painfully slow progress. However, these are only parts of the matrix of providing a service to all the variously abled and disabled people in our community to allow an end to the old notions of charity and dependence that have characterised our reactions to the disabled until now and to begin a new chapter of recognising the rights of all citizens to participate to the fullness of their abilities. This legislative measure fails that principal test and I ask the Minister of State at this 11th hour to hear the voices of those directly concerned, the disabled, their carers and their advocates, and to address the fundamental issue at the core of this to provide rights-based legislation for those in need.

Ms O. Mitchell:I welcome the opportunity to speak on this Bill. There has been no lack of speakers and I am happy to add my voice to those who have spoken so eloquently in recent months. I have been a Deputy for nearly eight years and cannot recall how often I have spoken on disability issues, yet it is the issue on which I have spoken most frequently. It is one of the issues that has been raised most often in this House on Leaders’ Questions, in Private Members’ time, by way of parliamentary questions and on the Adjournment. We have discussed practically every aspect of disability and the provision of services for the disabled. For instance, we have discussed schooling, day care for the intellectually disabled, respite places, residential care, mobility issues from tax incentives to obstructed footpaths, the needs of the mentally ill in society, the absence of supports for the mentally ill and the appalling lack of options for accommodation for them, which often has tragic consequences for them and others.

We have discussed disabled persons’ grants and the truly appalling situation it is in throughout the country and the failure to address the problem. When I raised the issue with the Minister I left him with the impression that he did not understand the causes of the problem underlying this particular scheme. We have discussed the disbelief and heartbreak caused to families by the added trauma of being told there is little hope of receiving any help towards the costs of adjusting [720]their homes to meet the needs of loved ones who are struck down by debilitating illnesses or accidents, which are devastating and life-changing events for families.

We have discussed the shortage of support workers in all the paramedical areas, including physiotherapists, speech therapists, occupational therapists, psychologists and so on. We have spoken about how the scarcity of such services causes agony for families of the disabled, particularly of young disabled, as it is at this stage that these therapies can have a huge impact on the level of disability the person will sustain into adulthood. Such therapies can have a dramatic effect on the quality of life for the disabled and can help them to achieve their potential, which is all that any of us can aspire to.

However, the problem is that not having these therapies is not impact-neutral. The failure to receive timely therapies is devastating in its consequences as it increases disability over the years. I cannot count the number of parents I have spoken with who have been saddened by witnessing their children becoming locked inside their own worlds, be it due to blindness, deafness or inappropriate behaviour, simply because therapists were unavailable at the critical time to help them develop the communication skills necessary to unlock their worlds. Neither can I count the number of children whose parents watch them become more crippled over time because they did not receive the type of activation and therapies that were necessary during their critical developing years.

For people who are not born disabled but become so later in their lives, such as stroke victims, therapists are critical. However, they do not have them. I cannot count the number of families that fell apart because they were unable to cope with the stress of living with untreated behavioural problems coupled with no respite and no psychological support. For these families, “if only” is the saddest phrase. This is true for all of us, but for these people it has special resonance in the context of the things that could have been done and the life changes which could have resulted if only the services had been available.

We have spoken about the difficulties of the disabled, particularly the physically disabled, to enter the workforce, the extent to which the quota system has been implemented and part M of the building regulations. We have discussed training for the disabled, the need for supported employment and that, for many, reaching 18 is regarded as the end of the State’s obligation to them. Consequently, this is the end of any real type of life, effectively making them prisoners in their homes. They stay at home in despair with aging parents who are unable to do anything to help them.

High suicide rates among that young group have been spoken of previously and just now by Deputy Howlin. It is critical for everyone that we have something to do when we wake up in the morning. Most of us go to our eight hours of [721]work, but whatever it is, be it a day activation centre, sheltered employment, part-time employment or full-time employment, everyone needs it. The disabled are no different in this regard.

I wish to highlight the impact of the withdrawal of CE schemes. I understand that employment opportunities for the Celtic tiger cubs have increased, but the disabled are still disabled. Many of them are unable to take up 40 hours of employment per week.

For them the choice is to work for 40 hours or to stay at home. We must gear these schemes towards dealing with the huge lacuna which has been left for many of the disabled in terms of employment.

We have talked about the young chronic sick, a group which all of us would agree is particularly tragic. Many of them are very dependent. They are often totally inappropriately placed in geriatric homes or psychiatric facilities in which they should not be. All these issues have been discussed at great length. We must ask ourselves what we have achieved as a result of all the debates we have had. Have they achieved anything? We have achieved some things. For instance, they demonstrated to all of us, irrefutably, that services for the disabled, right along the continuum from the cradle to the grave, were dismally inadequate. Where those services were not inadequate, they were just non-existent. In fairness to the Government parties, we do not have a monopoly on concern. This view was shared by everybody in the House, that is, that it was something we really had to tackle as a nation. We were all anxious to seek remedies.

The second thing all those debates achieved was unanimity about the hopelessness of proceeding in the way we had in the past, that is, in a piecemeal way of trying to plug service gap holes which emerged in the various areas where demand pressures grew and they became a huge media issue. We would partially deal with such demands and then forget about them. There is unanimity about the hopelessness of erratic budgetary responses which can be good in the good years and fall back in years in which revenues are not as buoyant. The backlogs are never dealt with and in bad years, they increase again.

There is also unanimity about the hopelessness of providing capital moneys for facilities but forgetting about the accompanying revenue funding required. We agree on the hopelessness of meeting the needs of one group at the expense of another and on the hopelessness of the failure to plan for the training of an adequate number of skilled and specialised personnel. There have been almost ten good years with perhaps a couple of years in which the Celtic tiger regressed. Even with the intent to improve facilities, qualified personnel were not available. I refer especially to paramedical services such as physiotherapy and speech therapy, in particular. It is almost impossible to access a speech therapist. Even with all the good intentions to provide the money for speech therapy, the therapists were not available. We [722]could not even attract them home from abroad. I understand some improvement has been made and that the number of places available in physiotherapy, psychology and speech therapy has increased. However, it will still be woefully inadequate even when those additional trained personnel come on stream.

We agreed that what was urgently needed was a comprehensive legislative response which, for the first time in an integrated and holistic way, would outline the rights of the disabled and the way in which the State would meet its responsibilities which flowed from those rights. I agree with what my colleague, Deputy Howlin, said in that nobody expected that rights based legislation would give the disabled rights over anybody else. That was never the intention and was recognised by everybody. Nobody expected that service levels would miraculously overnight go from inadequate or non-existent to perfect. Nobody expected the magic wand approach or that service levels would be divorced from the resources available to provide them. Of course, all services are limited by resources. That is the nature of life in that our standard of living is limited by our income. That is also true for a nation and everybody understood that.

What was expected, however, was an honest attempt to try to make a comprehensive new beginning in the way in which the needs of each individual were established and in the way we met and monitored those needs over the years to ensure that the needs were met and that if the needs changed, those changing needs could be met. Clearly, nobody knows the path of disability which changes over the years as do people’s requirements. Even when services are perfect, needs change so ongoing monitoring is essential. When all is said and done, it was a modest aspiration.

What has been so disappointing about the Government’s response is that the whole notion that any particular group should have rights established in legislation is seen as an enormous threat to the stability of the country. It is regarded as the unthinkable, the apocalypse and the appalling vista of the Barbarians at the gate, something we could not even contemplate. It is nonsense to respond in this way. It is a complete overreaction and it is a hugely disappointing breach of trust with all those groups involved in the negotiations leading up to the introduction of this Bill, the second attempt to introduce legislation. All those disability groups, their advocates, the disabled themselves and their families who participated in the preparation of and the lead up to this legislation genuinely thought they were on the same wavelength and heading in the same direction as those in Government with whom they were in debate. There was disappointment and outrage at the first disability Bill published prior to the last general election and eventually withdrawn. However, it is nothing compared with this because this is regarded as a breach of trust. The disability groups assumed [723]there would be a partnership approach and they believe they have been let down.

Not only does this legislation not deliver what was anticipated, its wording betrays the real thinking which seems to inform the Bill. The Bill is as much about what the disabled cannot have as about what they can have. It excludes rather includes and it limits rather than embraces. It protects the Department of Finance and not those vulnerable people who need protection. Its spirit is to circumscribe and restrict rather than to grasp this unique opportunity to offer hope and light and a new freedom to the disabled. It is, in its essence, mean-spirited and a really inexplicably defensive response to what promised so much — that is, the process of negotiations with the disability groups — but delivered so little. To me and to everybody who had anything to do with this, it makes no sense to be afraid that the reasonable demands of a vulnerable group of citizens for the opportunity to participate as best they can in the benefits of society will somehow bring ruin to our door and bring our economy crashing down. It is nonsense. We have many things to fear. There are many threats to the Celtic tiger but the disabled cannot be numbered among them.

Even the definition of disability was mean-spirited. It sought to limit anybody who might benefit from being labelled “disabled”. For instance, it excludes people in full-time employment. Even though to be in full-time employment, one would have needed the supports which came as a result of being disabled, one is excluded from the definition. It seems to be trying to prevent such people from availing of any benefits which might accrue to them. It did not recognise the possibility of episodic illness or disability. People must have an ongoing disability, yet so many illnesses are episodic. Mental illness and physical disability can be episodic. These people can be brought back in to full participation in the workforce and society if they have the supports during those episodes of disability, yet the legislation seems to be trying to exclude them.

I do not want to go through each aspect of the Bill and criticise it because the Minister knows the criticisms and the defects which have been highlighted by the various groups which have made submissions and by Members who have spoken. The reason I wanted to speak and to add my voice to those who have spoken is to impress on the Minister and the Cabinet that something can be salvaged from this Bill. Flawed as it is, we can give some meaning and reason to all the years of debate, preparation and promise if the Government shows some generosity of spirit and accepts the necessary amendments to change this Bill into one which is meaningful.

Fine Gael and the other Opposition parties could vote down the Bill and reject it out of hand but all of us are conscious that while it might be politically smart to do that and give us some political satisfaction, it may not serve the needs of [724]the disabled in the long run. God only knows when another disability Bill will come before the House. This may be our last chance for years to do something significant to benefit the disabled and to change the mindset that sees the disabled as a drain on our resources instead of valued citizens.

My colleagues, Deputies Twomey, Stanton and others, will submit amendments to the Bill. However, the kind of amendments that are required to change the Bill into a meaningful measure are substantial amendments which have financial implications and they must come from the Government. The reason I stand up here today is to plead with the Government to bring forward those amendments. I plead with the Minister and his colleagues not to throw away this opportunity to make the legislation meaningful. Even as legislators it is not often we get the opportunity to do something that will benefit many into the future. It is not an opportunity we get every day of the week to directly impact for good on the lives of many, the people who depend entirely on us to do something for them.

I ask the Minister not to waste this opportunity but to bring forward those amendments. None of us has anything to fear from meeting our obligations to the disabled.

Mr. Lowry:I welcome this opportunity to speak on the Bill which is, perhaps, one of the most important and challenging in recent years. I have a particular interest in this area, having a daughter working in the field of special needs care. I, like many of my colleagues in this Chamber and in the Seanad, have been inundated with letters and phone calls from worried parents, disability groups, carer associations and national representative groups, all of whom are extremely concerned about the impact this Bill will have on people with disabilities. It is often said that the measure of any nation can be seen in how it cares for the weakest members of its society. Among the weakest in our society are the old, the young, the sick, the poor and the disabled.

The Government has presided over a series of major blows delivered to the weakest members of our society. The elderly are extremely worried about the ever-increasing cost of health care and nursing home bills. It is generally accepted that the Irish health care service is in disarray as a result of years of bungling and mismanagement. We are told that young people in our society never had it so good, yet alcohol, drug abuse and suicide among young people is at all time record levels. The rising tide of the Celtic tiger has failed to lift the rowing boats of Ireland’s poor. On top of this, the Government is intent on bringing further hardship and hassle to the weakest in our society, the disabled.

For many years disabled groups were promised rights-based legislation which would guarantee a disabled person the right to services and support. They have been promised specialist services to meet their needs. They have been promised clear, [725]concise and straight­forward procedures to minimise bureaucracy faced by them.

Unfortunately, the Disability Bill does not cater for the weak and the vulnerable. It does not honour the previous promises to disabled groups. It will not cater for even the most mildly disabled person in society. It will legislate to ensure that a mildly disabled person is not considered disabled. The Institute for Design and Disability has referred to these people as the “undisabled”— being neither non-disabled nor recognised as disabled, they will be completely excluded from accessing any service. This will be a disaster for many, particularly the mildly disabled. It will be detrimental for any person who currently does not need to access services but who may need to do so in the future.

The definition of “disability” used in the Bill is far too restrictive. By using this restrictive definition many people receiving support and services from the State will be excluded under this Bill and will not be considered to be disabled. The Bill defines “disability” as meaning a substantial restriction in the capacity of the person to carry on a profession, business or occupation or to participate in social or cultural life by reason of an enduring physical, sensory, mental health or intellectual impairment.

The definition is narrowed further in section 6 where “substantial restriction” is defined as a combination of three distinct conditions, all of which must present a restriction that is permanent or likely to be permanent, results in a significant difficulty in communication, learning or mobility and gives rise to a need for services to be provided for the person on a continuous basis.

This definition excludes a substantial number of the disabled persons referred to in the report of the Commission on the Status of People with Disabilities. It also excludes those who qualify as disabled under the Equal Status Acts 2000 and 2004 and the Employment Equality Acts 1998 and 2004.

I am deeply disappointed the definition used in the Equal Status Act was not used in the Disability Bill. If the Bill is enacted without changing the definition of “disability” it will undoubtedly undermine all other Acts of legislation such as the Equal Status Acts and the Employment Equality Acts.

From the brief legal advice available to me on these varying definitions it appears that if the Disability Bill is passed with this narrow and restrictive definition it could result in a rush to secure services through the courts because of the discrepancies. If the Bill is enacted, the contradictions between the two pieces of legislation may leave the State open to a long and protracted legal battle. I urge the Minister for Justice, Equality and Law Reform to seek immediate legal advice on the matter. The Tánaiste and Minister for Health and Children should seek her own legal advice on the same issue.

Under the Equal Status Act, a person with dyslexia or other learning difficulties is recognised [726]legally as having a disability. However, under the Disability Bill such legal recognition does not exist. Many with dyslexia, once it is recognised, can avail of several learning aids which enable a dyslexia sufferer to learn at what is considered a normal pace.

In primary and post-primary schools and third level institutions there are provisions in place to identify and assist people with all learning difficulties. Most of these provisions were rolled out over the past three to four years. Under the Disability Bill the Department of Education and Science could legally renege on obligations to provide resources for those with learning difficulties. There are elements of the Bill which can be interpreted to mean that a Minister and Department can be exempted from allocating funds to disability initiatives.

I am disappointed the Bill does not provide for an independent assessment of needs. In the proposed legislation, assessment officers are responsible for deciding what services a person needs and liaison officers are responsible for arranging the delivery of services. These officers will have enormous power in deciding the level of service, if any, a disabled person will receive. However, these officers will not be truly independent because they will be employed by the Health Service Executive.

The complaints and appeals system as proposed is so complex and bureaucratic that it will only serve to discourage people with disabilities or their representatives from using it. It is widely acknowledged that people with disabilities and their families endure considerable difficulties in attempting to secure services. The essence of any disability Bill must be to reduce the amount of red tape for those with disabilities. Unfortunately, this Bill will not achieve that objective. This is surely a further example of how the weakest in society are blatantly ignored.

It is shocking that there are no references in the Bill to the multi­disciplinary services that are so urgently required. The Bill proposes to establish a very costly and cumbersome administrative network of assessment officers, liaison officers, complaints officers and appeals officers, without giving any clear indication of the professional backgrounds needed for this type of work or whether they may be former non­professional employees of the health service. The creation of such a bureaucracy must be questioned. Precious disability funding and resources must not be used to build a plethora of administrative posts when it is front-line specialists such as physiotherapists, special needs teachers and assistants, speech and language therapists and others who are so urgently required.

This Bill signals the beginning of a bureaucratic nightmare for people with disabilities and their families as they search frantically for essential services which will be wrapped up in red tape and hidden from those most in need of quality services and care. With this inflated bureaucracy proposed by the Government, it has failed to con[727]sider the implications of the Disability Bill on an already crisis-ridden health service.

Currently the HSE is not in a position to offer people with disabilities in different parts of the country the same level of service. Certain services are available for those residing in Templeogue, whereas different services are available for those in Tralee and they are different again in Thurles. There is not a uniform service in every part of the country for those suffering with the same disabilities.

The parents of an autistic five year old in Birr, County Offaly, contacted me. They have been sending their young girl to Scoil Naomh Áine, a special needs pre-school in Roscrea. The HSE midland region had been contributing to the pre-school with the HSE mid-western region. In recent months, parents have learned that the pre-school is to close with effect from June 2005. Parents were originally informed that their special needs children would be accommodated in mainstream child care centres, yet there are no such facilities in the area. Then the parents concerned were told that their child would instead have two hours of respite per week. All this, however, has been taken away and they have been told that the pre-school will close with no replacement service available.

On the other hand, the children who reside in the Roscrea area, which is in the mid-western region, will be offered a service from the north Tipperary early intervention services. This is proof of inequality in the delivery of services. I question the equality of opportunity presented by this Bill. Equality of opportunity has been air-brushed from the Statute Book by the Disability Bill.

I compare this situation to that of the Guardian Angel pre-school in Thurles, which has been winding down its services in recent years. It stopped taking in new children a few years ago, while continuing to cater for the current special needs children until they are transferred to a mainstream or special needs primary school. This is a school with very strong bonds to the local community. It was set up by workers in the Thurles sugar factory in the 1970s. The Guardian Angel pre-school has always been recognised as providing an excellent level of service for special needs children in the area. Local fundraising down through the years has enabled the Guardian Angel pre-school to provide state-of-the-art quality of care for special needs children. There is bitter disappointment in Thurles and the surrounding areas that the school is to close. The official line is that it is not closing but changing to become a resource centre with physiotherapists and many other specialists offering services for special needs children.

I raise the situation regarding these two special needs pre-schools because both schools are, in effect, closing. Parents of disabled children in the HSE mid­western region have been promised a level of service. While they have grave reser[728]vations about the new service offered, the experts say it is the best in international practice. Time will tell if the parents’ concerns were justified. My hope, for everyone’s sake, is that the experts are right.

Fifteen miles down the road from Roscrea, parents whose children attended the special needs primary school are having every single service available to them removed by the HSE midland region, which will no longer provide funding for an organisation in north Tipperary, despite Roscrea being nearer for the families involved and despite the excellent service offered by the local pre-school. It appears that those in Birr will get nothing. They were not consulted on this matter. They now have no pre-school, no respite and no service, and all this is taking place under the new integrated health service.

I fear that this Bill will exempt the HSE from having to provide the basic minimum services for people with disabilities, particularly in areas where the HSE regions overlap. A person in Thurles should have the same access to services as a person from Templeogue. Geography and location should not be used to discriminate against the disabled in society.

I have been contacted by several groups expressing both gratitude and worry almost in the same breath. The announcement in the budget of multi-annual funding of €894 million in 2006-09 was most welcome. I acknowledge the importance and significance of the funding. However, it is important to address four main areas of concern. First, people with disabilities are looking for equality — funding is only part of the solution. Rights-based disability legislation and the force of law is central and is absolutely necessary to ensure that people with disabilities can become truly equal citizens of Ireland. Second, people with disabilities want services as a right and not only when extra resources are available to the Government. Funding can be provided for a few years and then withdrawn when the budget is tight. Why are the weakest in our society always the first to suffer when the tiger no longer roars? Third, the system to date has failed many people with disabilities. Many do not have the services they badly need or only have access to services now and again. A rights-based disability Bill will put the person at the centre of the system. Giving people with disabilities the specialist services they need has maximum value in terms of public spending if they can fully access all public services such as transport, education, housing, training and so forth.

A rights-based disability Bill will have social and economic benefits for all, as people will get the supports and services they need to make the contribution to our society which they are currently being denied.

The issue of funding for disabilities is clearly of concern to anyone with a disabled family member, friend or relative. The Bill does not guarantee the ring-fencing of funding for disability services and supports. There have been [729]wild claims that the Bill ensures that a Minister must set aside resources that can only be used for disability. However, the Bill limits what a Minister can spend on disability services. To add insult to injury, the Bill also states that funding for disability services will only be provided after all other demands have been met by the Minister.

I reiterate my earlier point that the Disability Bill undermines the Equal Status Act, not only with regard to the definition of disability but also with regard to section 14 of the Equal Status Act. Section 14 states that nothing in the Equal Status Act should be construed as prohibiting the taking of action required by court orders, EU treaties and international conventions or where the taking of positive measures are intended to promote equality of opportunity or cater for the special needs of a disabled person.

The measure of this nation will be our care for the weakest in society in the years ahead. People with disabilities are among the weakest in society and the Disability Bill fails to measure up to their needs. It will fail to meet the needs of the disabled by making the mildly disabled non-existent in the system. They have become known as the “undisabled”. It will fail to meet the needs of the disabled by undermining reams of existing legislation such as the Equal Status Act, with a different, more restrictive, narrower definition of disability. It will fail to meet the needs of the disabled by creating a horrendous, outlandish, bureaucratic officialdom which will deny services for the disabled.

Mr. S. Ryan:I am pleased to have the opportunity to contribute to this debate. As far back as 1997, the Taoiseach and Tánaiste gave a specific commitment in the programme for Government to ensure that disability was placed where it belongs on the agenda of every Department and public body. This is the basis upon which the Government parties contested the general election of that year. The Disability Bill 2001, which was launched just before Christmas 2001, was fundamentally flawed and eventually withdrawn in February 2002. The Minister of State with responsibility for the Bill at that time, Deputy Mary Wallace, was made a sacrificial lamb for the incompetence of the Government on this issue. This scapegoating was reflected when the Ministers and Ministers of State were announced following the general election of 2002.

It is important that we have an opportunity to outline not only our own views on the Disability Bill 2004 but the views of those who deal with disability on a daily basis, including the parents of disabled children, carers and so on. I make no apologies for my intention to detail elements of submissions made by some of these interests in the context of this debate. The first is a letter I received from a number of constituents directly involved in dealing with disabled persons. The letter states:

At its very core, the Disability Bill should improve the lives of people with disabilities [730]and/or their families and ensure their basic human rights are finally guaranteed and protected by Irish legislation. Like every Irish citizen, people with disabilities need, and are entitled to, quality services. That means a clear, unequivocal right to an independent assessment of need with a legal entitlement to services identified by their assessment and an agreed plan to secure these services within a reasonable timeframe if they are not immediately available. They also need a genuine and simple complaints procedure, independent in every way, to allow redress when essential services are being unfairly denied. All Departments and public service providers must also be held accountable for including people with disabilities in their planning, supporting equal access to services and facilities and meaningful progress and targets in relation to issues such as employment and education.

The Disability Bill 2004 is presented to us as positive action to support participation by people with disabilities in everyday life. However, as it stands, this Bill has serious shortcomings and will not improve lives but will force people with disabilities in constituencies throughout the length and breadth of this country into a bureaucratic nightmare in the search for essential services. Never again will legislators have such an ideal opportunity to get this historic Bill right.

The authors go on to ask for our support to prevent the wasting of time and money on “inadequate and flawed systems”. That is a fundamental assessment of what we in this House are trying to achieve.

In the context of the withdrawal of the previous Bill, specific commitments were given that there would be ongoing consultation and that the views of those dealing with the issue on a daily basis would be taken into consideration. Brainwave, the Irish Epilepsy Association, made a submission on the Disability Bill to the Joint Committee on Justice, Equality, Defence and Women’s Rights. A constituent of mine writes in a letter to me that there is very little care for persons with epilepsy. He says:

Getting over seizures is a very difficult time but even still there is no help available. It is common knowledge that GPs and accident and emergency departments are not interested if a person has come out of a seizure even though this may mean a week with poor health to recover.

There will be no improvement in the situation of those with epilepsy if this Bill is enacted as initiated. These people require help and the Minister of State should take that on board in his considerations of the legislation.

All public representatives, whether in the Government or Opposition parties, have received numerous representations which attempt to highlight the shortcomings in the Bill. It was agreed at a well-attended meeting as part of the national [731]disability strategy in the RDS on 8 February that, as it stands, the Bill will do nothing to improve the lives of people with disabilities or their families, it will not meet the widespread demand for basic rights and it will force people with disabilities into a bureaucratic nightmare in the search for essential services.

The meeting resolved that, at a minimum, the Bill must be amended to include a clear and unequivocal right to an independent assessment of need for every person with a disability and that this assessment must be translated in law into a statement of entitlement to service together with an agreed plan to secure access to these services within a reasonable timeframe if they are not immediately available. Furthermore, the Bill must also provide for a genuine appeals and complaints procedure in any situation where essential services are unfairly denied to those with disabilities and it must provide for meaningful progress and targets regarding issues associated with employment and access to buildings and services. I appeal to the Minister to take on board the various views and amendments being presented by all the parties and Members in this House when endeavouring to enact the best Bill possible.

1 o’clock

One of the groups I have met over the years and which I have found to be very professional in dealing with disability is NAMHI. It has met the Minister and put its views on record. It is important that, in the context of this debate, its main concerns be put on record. Its first point is that: “Definitions of disability in the Bill are such that they will exclude many people even from an assessment.” This needs to be teased out because it is a fundamental point in all the contributions and submissions we receive. NAMHI identifies the following as further concerns:

—There is no ring fencing of funding for disability.

—No link between an assessment report and the subsequent service statement.

—There is no timetable for accommodating the needs identified in the assessment report or for a plan to provide services over a set time frame.

—The Complaints and Appeals system is unnecessary, bureaucratic and cumbersome and is designed to limit enforcement.

—The Bill will create a new administrative structure on top of a system that has been criticised for being administratively top heavy and will eat into resources for services and front line staff.

[732]—There are limitations on the obligations on Govt Departments and public bodies to make their buildings & services accessible to disabled people.

—There is no reference to making materials easy to read or in simple language for people with an intellectual disability.

In the context of work opportunities, I have had the opportunity in recent weeks to deal with a 25-year old lady with a severe disability whose mental capacity is fantastic. She wants to work but the only opportunity she had to enter the work environment was with another disability group on a community employment scheme. She did fantastic work and improved her capacity in every sense but was then told a two-year limit applied to people under 35 years in terms of extensions to the community employment schemes. I made representations to the Minister for Enterprise, Trade and Employment and, in fairness to him, he sent a response to me and the lady in question. She was very happy but she was only granted an extension of six months. There is a major difficulty in trying to get people with disabilities into the workforce. If exceptions can be made for people over 35 years such that their participation on community employment schemes can be extended, the position of people with disabilities should also be considered in this regard.

I acknowledge the commitment that has been made by Government to provide extra resources to deal with disabilities on an ongoing basis. Ultimately, we must ask who is to make the decisions and decide on priorities in the context of the needs of the disabled.

I refer again to people with intellectual disabilities, particularly those in St. Ita’s Hospital, Portrane. I have raised this matter before with the Minister for Health and Children. St. Ita’s was built in 1900 and was an asylum in its early years. Nothing in the Disability Bill indicates to me that there is a commitment to deal with the most vulnerable in society. I am sick and tired of the neglect of St. Ita’s and its residents. Over the past 25 years the health board, with the approval of the Department of Health and Children, has embarked on a programme to run down St. Ita’s with a promise of alternative accommodation. As a result, there has been little or no maintenance and the residents and staff are living with the consequences on a daily basis. This is not good enough.

The Declaration on the Rights of Mentally Retarded Persons, adopted by the United Nations, states people with a mental handicap have the same basic rights as any other citizens. The residents of St. Ita’s have been short-changed. The Department of Health and Children is well aware of the situation. The Taoiseach, Deputy Bertie Ahern, visited the hospital as far back as 1996. The Minister of State at the Department of Health and Children, Deputy Tim O’Malley, has visited the hospital [733]several times and, while he is proactive in providing services, there has still been no progress.

In 1998, the then Minister for Health and Children, Deputy Cowen, was well aware of the situation. He visited the hospital and announced with great fanfare a major development project therefor which had already been approved by the Northern Area Health Board and which awaited finance. The development project provided for 60 places at a bungalow-type facility to be built on the campus at St. Ita’s. Day and other therapy services were to be relocated on campus and upgraded. Some of the existing units were also to be refurbished to provide appropriate accommodation for the remaining elderly residents.

We await a significant response to this. Planning permission has been approved and approval has been obtained from the Health Service Executive, yet, week after week and month after month, there is no response from the Government in respect of dealing with the people with intellectual disabilities at the hospital. Annie Ryan of St. Joseph’s Association for the Mentally Handicapped brought the Department to the European Court and we were told support would be forthcoming. This is one example of many in which people in need who have no voice are pushed aside. This is not good enough.

I could elaborate at length on this Bill. The Commission on the Status of People with Disability concluded that there could be 360,000 people in this category in Ireland. This Bill does not entitle this number of people to a service. There is much to be done and we as legislators must try to put our thoughts and suggestions together to produce a Bill of which we can be proud. This is important for the people with disabilities who look to us for this. It is for us, and especially the Minister of State, to ensure that we do not take a blinkered approach to this but have an open agenda and do the best we can to produce the best legislation for people with disabilities.

Mr. Kehoe:I am delighted to have the opportunity to speak on this important Bill. I too hope we can have a debate that will bring together the views of all sides. Everyone in this House is concerned with the issue and feels strongly the need for change. This cross-party belief and commitment are unique. Despite this it has taken more than seven years for this Bill to come before the House. There has been widespread despair and a sense of betrayal among people with disabilities, their families and groups representing them.

As one drives through towns and villages across the country one sees in many places the Bank of Ireland sponsored ’host town’ signs for the Special Olympics which bring back memories of pride, inclusion and community spirit. The enthusiasm, colour and celebration of the games were captivating. The many volunteers and people in host towns deserve credit for having made the athletes feel welcome. It was one of this [734]nation’s proudest achievements when the focus was on ability, not disability.

After the games there was a sense of anticipation and hope that a rights-based Disability Bill would be introduced soon. Almost two years later we are only on the Second Stage of the Disability Bill. The Taoiseach dashed the hope of a rights-based bill at the end of 2003, the year that Ireland hosted the Special Olympics and the European Year of People with Disabilities. Despite significant support for people with disabilities, they continue to be neglected at every level of public policy. As our party spokesperson on disabilities, Deputy Stanton, pointed out last May, speaking on a Private Members’ motion on disability: “We disable people by not providing the appropriate supports they need to reach their potential.” We must not place barriers in these people’s way.

Resources in this area are insufficient, and there is no strategic thinking, planning or political commitment to rights. As Deputy O’Sullivan stated in this House on the same Private Members’ motion “the truth is that no service providing agency in Ireland in any area of disability service is able to plan for the future.” In every aspect of services for the disabled there is queuing, rationing and under-provision. In some cases there is no service provision at all and in many cases there is a battle for every service, no matter how small.

There are many types of disability, each requiring different types of service provision: intellectual disability, physical and sensory disability. Mental ill health is the cause of 20% of all disability. Some people are born disabled and some become disabled as a result of an accident or an illness. Disability is permanent and life changing not only for the disabled person but for his or her family. As Deputy Olivia Mitchell stated on a previous occasion, “the greater the disability the greater the dependence, the greater the impact on the family and the greater the change they must endure”.

The definition of disability contained in the 2004 Bill will exclude many people who have various types and degrees of disability and who have access, and other, needs. I welcome the provisions in the budget for people with disabilities. Only with a combination of adequate funding and proper rights-based legislation will the plight of people with disabilities and their families improve. According to the Combat Poverty agency people with disabilities are at the highest risk of poverty. Only 42% of people with disabilities are in employment, half the rate of employment among the rest of the population. The reality for many without the adequate resources is that they are institutionalised.

The Government must supply funding and support to ensure that people with disabilities can meet their needs whether in the areas of housing or education, and have adequate standards of living or health. The Bill does not provide sufficiently for this.

[735]Equal citizenship rights are required for people with disabilities. It is unacceptable that one in every ten citizens here does not enjoy the same rights as the other nine. It is also unacceptable that people with disabilities must rely on the goodwill of the general public. Every day people reach deep into their pockets to contribute to funds for people with disabilities. Were it not for the goodwill of people inside and outside this House who do this, the disability sector would be in serious trouble given the lack of Government funding.

People with disabilities should enjoy the same rights and privileges as their fellow citizens and not constantly have to try to convince the Government of that. One of the submissions to the Commission on the Status of People with Disabilities stated “All that is required is a little respect and basic needs and rights. Surely that is not too much to ask.” For the Government to claim that rights are too expensive is unjust. A civilised society recognises the human rights and dignity of people with a disability and supports them where necessary, and provides the care they need.

We must ensure those who are marginalised and under valued are allowed to achieve their full potential and are supported in doing so. In 2002 the United Nations committee on economic, social and cultural rights sounded its worries about the persistence of discrimination against people with physical and mental disabilities in Ireland. As Deputy Stanton pointed out on a previous occasion we have a major social crisis caused by the persistent marginalisation of people with disabilities.

There is no reason to think a proper rights-based Disability Bill would lead to further litigation and the 2004 Bill is not a proper rights-based Bill. Families are being forced into court in an attempt to get services, support and rights. It is an insult to these families that Ministers say that if they are granted rights, they will spend all their time running to the courts. The introduction of a comprehensive set of rights for people with disabilities will not bankrupt the State; it would challenge the system to respond appropriately. Strong legislation is required so that people will not have to go to the courts. There must also be collective responsibility and joined-up government for the effective implementation of legislation on disability. We must ensure that money is spent in a cost-effective way and delivers appropriate services and supports for the people for whom it is intended.

I am happy that at last the Bill has come before the House but I am unhappy with its quality and content. I do not reject this Bill for to do that would be to waste another three years as happened with the withdrawal of the Disability Bill 2001. I will have to oppose certain aspects of the Bill, after speaking to my colleague Deputy Stanton. We will not let the Government off the hook. It is our duty and responsibility as legis[736]lators to ensure that when the Bill is enacted it will be improved legislation. Like my colleague, Deputy Stanton, I challenge the Government and the Minister of State, Deputy Fahey, to engage in real, vigorous and forensic debate on the Bill and to approach it with an open mind.

There is much work to be done on the legislation. We in Fine Gael believe it is seriously flawed and obtuse and in some ways further entrenches what is already a seriously dysfunctional system. The language used is opaque and almost unintelligible at times. The structures it envisages appear to be overly bureaucratic and its effect may be the opposite of what was intended. According to legal experts, the Bill is overly complex, convoluted and incomprehensible, and this was intentional and avoidable. It appears that one must be a legal expert to comprehend fully the complexities of the legislation. Was it designed so that ordinary members of the public could not understand it? That appears unlikely. The Bill makes little reference to making the material easy to read or to phrasing it in simple language for people with an intellectual disability. It is not only badly written, it will deny greater equality to people with disabilities.

I hope the Government will accept the amendments tabled by the Opposition. A number of amendments will be tabled on Committee Stage. There is an onus on Members on both sides of the House to ensure that the legislative process will do what it is supposed to do. We can make real improvements to the Bill if the Government listens to Members on all sides of the House.

One problematic area in the Bill relates to the definition of “disability”. It appears to be a definition that will exclude people with disabilities. The definition adopted is unacceptably narrow. It will reduce the numbers qualifying for assessment of need, exclude those who require early intervention measures and exclude people with episodic needs. The definition is comprised of many issues that need clarification. The notion of the medical model of disability on which the definition is based is outdated. Deputy Lynch previously highlighted that if a person has a disability, he or she may fail to qualify for an assessment of needs under the provisions of the Bill. However, if such a person’s public service employers have a quota to fill, they will be able to include that person as one of the people with a disability they employ. This is utter hypocrisy from the Government’s point of view. They should not be allowed to have butter on both sides of their bread.

As I stated, one of the major problems with the Bill is that it will lead to more bureaucracy. Extra layers of bureaucracy will make matters more cumbersome and lead to misuse of resources. Hundreds of officers will be involved, including officers for assessment, liaison, complaints and appeals. These numbers need to be reduced. Surely there is no need for all these layers. Can the same person carry out two or more of these functions? The Government has a record of [737]increasing spending and increasing the layers of officialdom, yet achieving little in terms of real improvements in services. We have seen this happen in the health service and in numerous other areas. The same things cannot be allowed to happen with this Bill. There is a real danger here that extra staffing will take from the delivery of services.

An area of the Bill that is overly bureaucratic is the complaints and appeals process. It is too complex and needs to be simplified to make it more easily accessible. Under section 2, the complaints and appeals system is designed to limit enforcement. Due to the constant reference to resources, it is arguable whether there is a right to enforce. Access to the Circuit Court is only to enforce the decisions of an appeals officer or complaints officer. Access to the High Court is only on a point of law. A review system should be built into the legislation so that we can take a look at it in two to three years’ time and see what works and what does not work. I recommend this to the Minister.

Another problem with the Bill is that it does not refer explicitly to housing. It provides a statute-based right to an assessment of disability relating to health, personal, social service and educational needs. This should be amended to include provision for the assessment of housing and accommodation needs. As some of my constituents in Wexford have experienced, there are problems with disabled persons’ grants. The Bill should refer to the needs of people with disabilities in regard to housing and accommodation. According to the Irish Council for Social Housing, many low-income disabled people are unable to access suitable accommodation. This must be changed. The issue of independent living must also be addressed. People with disabilities should be enabled to live as independently as possible and provide the support and services necessary for them to do so. Provision of more centres for independent living are necessary and the Minister should consider this.

The Bill does not honour the commitment in An Agreed Programme for Government. It does not appear to be anything like the type of Bill to which the Government committed. The commitment given in An Agreed Programme for Government stated, “We will complete consultations on the Disabilities Bill and will bring the amended Bill through the Oireachtas and include provisions for rights of assessment, appeals, provision and enforcement.” The word “right” is nowhere to be found in either the title of the Bill or the Bill itself. The Short Title of the Bill makes it clear that funding for disability services will not be a priority. It reads as follows: “An Act to enable provision to be made for the assessment of health and education needs occasioned to persons with disabilities by their disabilities, to enable Ministers of the Government to make provision, consistent with the resources available to them and their obligations in relation to their allocation, for services to meet those needs.” What [738]will be left over will go to services for people with disabilities. They will not be prioritised. There is no ring-fencing of funding for disability. There is also no right to an independent assessment of need.

The Bill is clearly resource-based rather than rights-based. The Government has the perfect legal defence, which allows it to cite resource restrictions under the provisions in section 5 of the Bill. The legislation exempts the private sector from accessibility obligations, which is a direct contradiction of the recommendations of the Commission on the Status of People with Disabilities.

What must be worrying from the point of view of a person with a disability is the use of the word “practicable” as highlighted by Deputy Cuffe at the end of the year. This indicates that it may not be practicable for the State to meet their needs. I pay tribute to those who have lobbied us and those who are campaigning tirelessly for the rights of people with disabilities. It is unfortunate that their struggle for rights will have to continue.

I will conclude by referring back to the letter Deputy Stanton read in this House on 4 November. A father wrote the letter conveying his despair over this Bill to his 11 year old son who has a disability. The lines that touched me in the letter read as follows:

Poor Mark, if you only knew what threat you are. Your life is not to be facilitated without being shackled to the ‘availability of resources’ or the grey notion of practicability. We are not looking for money. We are looking for security. We are not looking for everything now. We knew it would take time. A slap in the face, that is what we got.

Everyone in this House owes it to children and adults with disabilities, and especially their families, to improve the Bill and make it work effectively, which can be done. While we must recognise that legislation will not solve all the problems, it is vital that we endeavour to amend this legislation for the better. Fine Gael believes that the Bill needs to be taken apart and put together properly. If this is done correctly, it should result in people with disabilities being finally able to take their place as equal citizens of the country.

Minister of State at the Department of Justice, Equality and Law Reform (Mr. Fahey):I would appreciate if the Deputy would give me the details of the father who wrote that letter. I would be interested in meeting him.